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TSC Matters

Thank You Future Leaders Class of 2020-2021

The six young adults in the Future Leaders Class of 2020-2021 greatly exceeded the requirements of the program and have been instrumental in moving it forward. Too often young adults with TSC feel alone with their disease, but they helped create a space for young adults with TSC to connect with each other and share resources.  Their class inspired the entire TSC community and continue to inspire all of us at the TSC Alliance.

Here are some of the ways the Future Leaders contributed to our mission over the last year and their favorite experiences:

Advocacy – The class participated in the 2021 Virtual March on Capitol Hill, working with government advocacy leaders to talk about how TSC affects their lives and how Tuberous Sclerosis Complex Research Program (TSCRP) funding impacts them as individuals. They shared their stories and desire for change with House and Senate leadership and staff and wrote letters explaining the importance of TSCRP support.

“Though it was virtual and different, my favorite experience was March on the Hill and getting to share my TSC story and spread awareness of TSC’s impact.”
– Celie Johnson

Inclusion – The class advocated on behalf of diversity, equity, and inclusion principles when planning and organizing Future Leader events, such as webinars and open forums. They worked to ensure racial equity, LGBTQIA+ inclusion, and disability-inclusive resources were discussed during Webinars and Open Forums, while creating a space where every individual had their questions answered. Members of the TSC Future Leaders class participated in the Diversity, Equity, and Inclusion taskforce at the TSC Alliance and helped select the incoming Future Leaders class from a range of diverse backgrounds and geographies.

“Developing friendships with the other Future Leaders and members of our young adult community was an incredible experience. I learned so much from each person I connected with and was able to truly appreciate the different identities and perspectives that everyone brought to the table. Meeting with the incoming class of Future Leaders showed me how much potential our community has and I am so proud to continue on as a mentor to 2 Future Leaders.”
– Jonathan Goldstein 

“I felt that the most challenging part was deciding who the next future leaders would be.”
Preston Fitzgerald

Peer Support – The class hosted peer-led conversations with other young adults in order to foster a supportive community with youth supporting other youth and directed others to TSC-support resources while creating regular social opportunities for individuals within the TSC youth adult community. They also organized and managed a TSC Future Leaders mailbox so that regular communication and resource support was offered to young adults on an ongoing basis.

“Be open about your story you’re not the only one who’s going through it!!”
– Presley Mylar

Community Building – The group served the young adult population on behalf of the TSC Community Leadership as main points of contact for teenagers and young adults with questions about TSC. Through that process they continue to build bonds and friendships as they serve the young adult community by staying on as formal mentors to the incoming 2022 TSC Future Leaders.

My favorite part of being a future leader was….. “Meeting everyone on the team and working together – creating bonds.”
– Emilie Racenet

Awareness – They created and hosted five e-webinars for young adults focused on a range of different topics, including seizures, transitions, and the impacts of COVID-19 on the TSC community. Members of the 2021 Future Leaders class took their leadership beyond the program and participated in working groups for the 2021 Step Forward to Cure TSC Walk-Run-Ride, helping to develops both sponsorship and marketing materials for the event.

“My favorite experience as part of the Future Leader program was working alongside my great peers in a unified effort to bring awareness and further develop the community of young adults affected by TSC either directly or indirectly.”
– Kirk McCreary

 

To hear from the Future Leaders Class share more about their experience in their own words, check out the next issue of Perspective Magazine, coming out later this month.